Finding God's Abundant Blessings In Ordinary Life

Category Archives: special needs

With a ten month old at hip, I’d taken up my usual place at the rear of the sanctuary so as to distance my noise-maker from the attentive audience. It was Pentecost Sunday, the Church’s birthday, and Monsignor was traversing the aisles between pews. A pine branch in place of the aspergillum, he was dotting his parishioners with holy water blessings.

He seemed to take an extra long time, weaving through the maze of pews, all the while dipping and flicking that broken, wet branch. Just when I thought he’d direct his path towards me, he turned again done another row. Of course, paying attention to the details and taking extra care in sacred matters wasn’t surprising, this was Monsignor Williams after all. And while not exactly as dismissive of time as St. Pio of Pietrecina (who was known to celebrate three hour long Masses), he wasn’t in the habit of curtailing the Lord’s Holy Sacrifice in order to satisfy forty-five minute man-made quotas either.

At long last, Monsignor and his faithful altar servant strode back in my direction. Positioned several feet behind the last row, I prayed the sprinkled blessings would reach little Pio and me. Then, to my amazement, Father not only hit my target, but he brushed passed and pushed open the heavy, wooden doors behind me which led to the community room. While most priests might have contained their ministry to inside of the sanctuary space, he recognized there were sheep beyond the confines and, like the Good Shepherd, he sought them out.

Keeping in mind this pastor, who (only weeks away from “retirement”) struggles with the physical challenges of an aging body, I was struck by this living testimony of the gospel. Typically, those of us resigned to the far corners of the building (i.e. basements, corridors and cry rooms) have to take up our cross and, like the land-locked crowds facing Jesus’ boat, be satisfied with the grace that come through speakers and TV screens.

Watching Monsignor meet his parishioners where they were, I thought about the importance of stepping outside of our comfort zones, of being Jesus’s hands and feet beyond the beaten paths of our ordinary, comfortable travels.

A few friends of mine have children with special needs and they routinely face the challenges of not only meeting their daily needs, but of dealing with the misunderstandings and harsh criticisms of bystanders. Understandably, I admit my own irritation when I encounter some wild child running amok in the superstore while a parent stares mindlessly at a smart phone or the unconsoled wailing of a toddler (who isn’t being removed) during the Mass readings. And it is true that parents do need to discipline appropriately and occasionally remove disruptions. But with that being said, those parents and children are no less in need and perhaps might be more so in need of Christ’s presence.

One particular Sunday, I heard a bit of a ruckus as Mass was being offered. Shifting my gaze sideways to the other side of the sanctuary rear, I watched a weary mother trying in earnest to juggle two little girls by herself. I could read the frustration on her face as she fed the more rambunctious of the petite darlings Cheerios and pushed a sippy cup her way. As the littlest one twirled, I saw the mama take to the kneeler and close her eyes. I imagine she was praying for peace or perhaps, like I have so many times, laying out her sorrows and begging for her sacrifice to be enough.

At some point in the Mass exodus she disappeared and so I never had the chance to introduce myself. But I overheard a conversation of which her children were the topic. The noise had not gone unheard and fellow parishioners were voicing their displeasure.

Sadly, they weren’t privy to the lone mother’s struggle that morning. They hadn’t seen her solo-parenting arrival nor watched her face contort in vexation as she longed to soak in the Word, but was instead focused on keeping her girls’ winces to a dull roar.

Laying aside the cry room debate and the Mass isn’t a picnic argument, I think the problem is that we so often want to stay inside the parameters of our self-designated space. We can so easily discount those who are on the “outside.”

About eight years ago we belonged to this wonderful, tiny parish of mostly retired couples. As the parents of six with another on the way, we stood out (I mean really because we barely managed to cram into a pew). No doubt our family may have brought some before absent disruptions, but rather than eye our brood with suspicion we were adopted and assimilated. Our children breathed some youthful life in to the church and we learned to be better parents under the tutelage of our more mature peer.

The grandmothers of St. Catherine’s were quick to grasp a small, wandering hand or invite a fidgeting Brelinsky to sit beside them. They remembered well the difficulties of parenting their own and so easily slipped on our “shoes.” And our children sensed the camaraderie, they recognized that mom and dad were not flying solo, but that we were all members of the Body.

Like Monsignor, the members of that parish didn’t restrict Jesus’ reach. They took the time to meet us, know us and minister to us. They could have stayed planted in their “designated” pews and kept close company with established friends, rather than widen their circle and include us. My family would have suffered for it because while God would draw us far from that location (due to a necessary move) less than two years later the graces we received continue to this day.

I wish I had had the chance to encourage that frazzled mother, to offer her a compliment and a warm smile. To show her that Jesus does indeed want the little children around His table. I wish more people took the time to connect with the parents of special needs kids. To recall their inherit dignity and extend compassion and mercy their way.

In this age of pseudo-social kinship, we are failing all too often to make legitimate connections. We need to press open the doors and meet people where they are. Get to know one another, identify with our common ground and minister to one another’s needs, so that some day no one will be left outside.

Her name was Misty. It was printed in chalk on the nurses’ station board along with a list of other first names. We would never actually meet, but I caught a glimpse of her one day as I walked passed her room. The mental picture I’d developed before that sighting was of course all wrong.

Just days into our month long stay in the Pediatric Intensive Care Unit, we met Misty’s family: aunts, an uncle, a grandmother, father and cousins. Now, almost nineteen years later, I’ve lost count, but there were enough of them to fill the room around us. Doubtful our paths would have ever crossed if not for the circumstances that forced us all into that tiny waiting room.

Naive, overwhelmed newbies we were, but Misty’s family were well-seasoned veterans in this system of corridors, white coats and ever-changingprognoses. They took to us and us to them in a fast friendship that felt like it would last a lifetime.

In bits and pieces, through conversations and encounters over the next weeks, Misty’s life story unfolded. Born to young, unwed parents, her mother died sometime before the baby would finish toddlerhood. Knowing she would never see her daughter grow up, Misty’s mother had one dying wish; she made her sister swear to raise the child as her own. That little sister bore that promise with unswerving faithfulness and along with the rest of the extended family she committed the next fourteen years to caring for her sister’s only offspring.

Sometime after losing the mother, it became apparent that Misty suffered from serious medical conditions which were the result of an under-developed brain. Her life would include many PICU stays and she would never know the freedom of spinning to “Ring Around the Rosie” or the joy of singing her ABCs. By the time we met her family, she was relegated to a bed, unable to speak or provide her own basic needs.

Surely some outsiders questioned her “quality of life”. To a culture that equates physical fitness and mental capacity with the measure of a person’s worth, Misty might have appeared a hopeless case.

Her family knew her better.

She loved it when her aunts and grandma fed her, they proudly boasted. At mealtimes, she rewarded them with smiles and eyes that spoke the words her mouth could not. And though the doctors and nurses insisted she was forever silent, Misty cooed for those who loved her. Rather than flowers and teddy bears, family members shopped for new, lace-trimmed nightgowns to make her not infrequent hospital trips more pleasant. Every day it was someone’s job to brush out her long, flowing hair and wash her pretty face. True to her promise, Misty’s aunt insured that someone always remained nearby.

Words like burden, trouble, or unwanted never entered our conversations.

As though it were yesterday, I recall the upset in their voices on the day they discussed the doctor’s recommendation for a feeding tube. Considering the infrequency with which doctors actually bothered to speak directly to family members, I assume the news was delivered via the shift nurse. The tube was being ordered to better facilitate her nutritional needs. On a floor full of kids dependent on breathing tubes, drainage tubes and electronic monitors, a feeding tube was the next logical step. But to Misty’s family, that step was leading in the wrong direction.

To the doctor, who probably spent five minutes reading her chart, this fourteen year old was a case study in medical interventions. To the busy nurse, Misty was another terminal patient with machines to monitor, levels to record and notes to take. The act of feeding her was just another necessary procedure to follow, but to her aunts and grandmother meals were so much more.

At the time I thought I understood their desire to retain this autonomy for Misty, the ability to taste flavors and feel textures across her tongue. But now that I’ve experienced the excitement of spooning first bites into my own little ones’ open mouths, I can relate all the more to their desperate attempts to protect her mealtimes. Three times a day, Misty’s family had the privilege to lovingly nourish her with food and she had the opportunity to feed their hopes and dreams. With my own not-yet-verbal children, I have to watch for their bodily cues to tell me if the food I offer is pleasing to their palate and when they’ve reached their fill. Feeding a child means moving in close, making eye contact and connecting (physically and mentally).

A feeding tube meant more than simply relinquishing a chore, it meant stripping Misty of one more “normal” function. When you expect your child to grow-up, to advance through life’s milestones, it’s easy to take such little tasks for granted, but Misty’s family didn’t have that luxury.

On that day, walking passed her room, I peered in expecting to see the girl my mind had formed. Instead, the young girl of about fourteen appeared so tiny and fragile in her hospital bed. Her legs barely reaching beyond the midway point, she was no longer than a child of five or six. And that long hair flowed nearly the full length of her stunted body it seemed. I was startled by the reality.

The image I’d created was based on my idea of “normal” because that’s how Misty’s family portrayed her. The obvious love they had for her communicated a different picture, while my eyes sized her with a worldly measure. No one ever knew my surprise and for that I am glad because I am ashamed of it. My false vision betrayed my ignorance and bias.

Those few weeks, nearly two decades ago, changed my life. I lost touch with her family, so I never did learn whether or not they managed to protect her from the feeding tube directive, but I’ve never taken for granted the real importance of “feeding” my children.

Misty was truly everything that her family saw her to be. Beautiful. Worthy. Special. Perfect. And in my mind, she will forever remain larger than life not because of her stature, but because she personified Christ (the hungry Christ, the naked Christ, the imprisoned Christ) to those who took the time to see.